Cancer patients battle for access to breakthrough drugs

Cancer patients are being forced to try innovative ways to self-fund expensive breakthrough drug treatments that are outside Government subsidies.

Transcript

LEIGH SALES, PRESENTER: Imagine if you were suffering from cancer being told there's a new drug that could extend your life by years, but you can't have it because you can't afford it.

That's exactly what's happening, even as amazing breakthroughs in cancer treatment are being made.

Without government subsidies, the drugs are so expensive that terminally ill patients are struggling to afford them or simply doing without.

Tracy Bowden reports.

???: We're here for a mate and his family who are going through a bit of a rough time. The most important thing of the whole night tonight is to spend as much money as ya can.

TRACY BOWDEN, REPORTER: It's a chilly Friday night in Melbourne and hundreds of people have turned up at the local high school in Knoxfield to help their friend, Scott De Young.

Scott De Young is 34 and a father of three. He has fourth stage melanoma. This fundraiser will hopefully buy him time by helping him buy the drug he can't afford.

SCOTT DE YOUNG: It's all about my kids and my wife, um, just spendings as much time as possible with them, especially the young fella so they know who their dad is and remember who their dad is. That's what it's all about: time.

TRACY BOWDEN: The drug which could give Scott De Young years rather than mere months more with his family is Ipilimumab, which reactivates the body's immune system.

SCOTT DE YOUNG: It'll send it into either remission or shrink the cancer for 10 months on average. And then there's been some people who've used it up to five years. So, my prognosis was 12 months or less. It's a huge difference.

TRACY BOWDEN: The drug is approved for use in Australia, but is so expensive there's no way Scott could afford it.

SCOTT DE YOUNG: $120,000 for the four doses, which for me just wasn't feasible, wasn't possible for us. So some amazing friends of mine decided that they were gonna make it happen.

TRACY BOWDEN: Two weeks ago oncologist Rick Kefford told 7.30 about the enormous excitement these new drugs created at a conference in Chicago. But back home he has to face the reality that many of his patients will never have the chance to try them.

RICK KEFFORD, PROFESSOR OF MEDICINE, WESTMEAD HOSPITAL: I'm deeply, deeply disappointed, as are all my colleagues, that for the Australian cancer, neither of two effective life-extending treatments have been made available in a reimbursed fashion.

TRACY BOWDEN: The reason these drugs are so costly is that they're not yet listed on the Pharmaceutical Benefits Scheme, or PBS, so they're not subsidised by the Federal Government.

RICK KEFFORD: The Pharmaceutical Benefits Advisory Committee have made a strong recommendation that Ipilimumab should be reimbursed. That went to cabinet, as I understand it, around Christmas last year, but we're still waiting for a response. Now I just don't think that's fair and I don't think it's transparent.

TILLY RYAN, MELANOMA PATIENTS AUSTRALIA: We're arguing from a patient point of view that regardless of any inefficiencies in the Pharmaceutical Benefits Scheme, listing process or in terms of any fiscal considerations that the government of the day might need to be making. In the meantime, patients are being impacted upon very, very badly.

TRACY BOWDEN: Tilly Ryan from the support group Melanoma Patients Australia says many families don't know where to turn.

TILLY RYAN: Some people unfortunately who have advanced melanoma don't have necessarily the energy, resources or network to be able to fundraise, so they have to look at other alternatives, such as accessing their superannuation, their private savings or indeed selling their own assets such as their family home.

JULIE SUTTON: I'm feeling fantastic, actually, yeah. I'm glad to be alive and it's three years down the track, so, pretty happy.

TRACY BOWDEN: It was so different when 7.30 met Julie Sutton back in 2010. The mother of one had secondary melanoma. But after taking part in a trial of another new drug, the results are remarkable.

JULIE SUTTON: At the moment I've got no evidence of disease, so that means I've got no tumours in my body, which is amazing. Never thought that would happen.

TRACY BOWDEN: And obviously the fact that you could go on this trial was what made all the difference. I mean, what would've happened if you hadn't been able to go on the trial?

JULIE SUTTON: I probably wouldn't be here now. The diagnosis for - or prognosis for metastatic melanoma is eight to nine months.

TRACY BOWDEN: Julie Sutton says if she was not on the trial, there's no way she'd be able to afford the drug, which has already given her three more years with her family.

JULIE SUTTON: There's not a day that goes by that I don't feel so lucky and I actually feel a bit guilty sometimes too because, you know, there's - I know there's so many other people out there with melanoma or any other kinda cancer that unfortunately aren't as lucky as I am and haven't been accepted onto a trial.

TRACY BOWDEN: Professor Kefford warns of an even bigger issue in the years to come when the Federal Government won't be able to fund all the new cancer drugs coming onto the market.

RICK KEFFORD: The message I think to governments is to really tackle this head-on, to be totally transparent about the problem, to say, "Look, we've got a dilemma here, folks. We've got a barrage of very effective new drugs coming through for cancer, but they're incredibly expensive. How are we going to fund it? As a community, as a society, what is fair?, how are we going to allow equal access for everybody?" And if necessary, tell people that they're going to have to put money away or save it or get new insurance schemes.

TRACY BOWDEN: With the help of his friends, Scott De Young has managed to raise enough money to buy his first dose of the new drug. But he fears he may have to do this all over again for future treatments.

SCOTT DE YOUNG: I think in this day and age, it's insane that people have to organise their own fundraisers for drugs that are available for free in other countries around the world. It all comes back to money. And how can you put a price on someone's life? I just - yeah, I can't understand it.